Version V03 by Sarah Healey for South Downs Health, undated, but received June 2006 from the Bereavement and Loss Committee of BSUHT, hereafter referred to a version A
ALLOWING A NATURAL DEATH (AND) POLICY
Version SCN PCT (DNAR) which was derived from version A by Caroline Huff for Sussex Cancer Network dated May 2006 from the Partnership Group (formerly Cancer Patients Forum, hereafter referred to as version B
Comments by John Kapp, 22 Saxon Rd Hove BN3 4LE 417997 firstname.lastname@example.org, user representative and former carer. 23.6.06
1 General comments
I welcome this attempt at a written policy on Allowing a Natural Death, (AND) which is the nearest thing I have yet seen in the NHS to a living will, which is very popular with patients. The policy has the potential to dramatically improve patient and carer satisfaction in the management and quality of death, unblock beds of those who die in hospital against their wishes, and save money.
However, both versions of the document as written fall far short of realising the policys potential, as they deal only with one aspect of allowing a natural death, namely the Do Not Attempt Rescusitation DNAR policy. Version B omits AND from its title. The document should be expanded to cover all important aspects of achieving a natural death.
Both versions are clinician-centred, so gets bogged down in doctors excessive need to be needed, (which motivated them become doctors). Underlying the versions is the mistaken belief (paradigm) that death is a failure ie that doctors are responsible for the lives and deaths of their patients, that they can prevent them from dying, and that if they do die, it is their fault.
In fact, life is a gift from existence, over which no-one has control. Doctors should stop playing God, allow patients to take responsibility for their remaining life and their death, and only intervene if asked, and not when the intervention is futile. Most terminally ill patients want to die, (despite their protestations to the contrary for the sake of their relatives) so doctors are not doing them a service by prolonging their lives.
The document should be redrafted.to make it patient-centred and practicable, as I have done below.
2 Decision: Allowing a Natural Death (AND) or Interventions to Prolong Life (IPL) at a cost
I do not agree with version A that the decision lies with the clinician. (first 3 paras of 3.5, and paras 4.1, 4.2, 4.3,) Version B is better, saying If the patient is unwilling or unable to make the decision
the consultant / GP will make the decision on their behalf. However, neither version goes far enough down this sensitive road, where no-one wants to go because it reminds them of their greatest fear their own death.
I believe that staff should discuss the issues of Allowing a Natural Death (AND) with the patient and his carer, but the actual decision whether to opt for a natural death (or have the usual interventions to prolong life at a cost) lies with the patient.
The questions do you want a natural death, and the related question where do you want to die? should be asked in good time, while the patient is well enough to comprehend it and give a considered reply.
The responsibility for asking these questions should be shared equally between the staff attending the patient (doctor, nurses, and even cleaners and porters) The questions should be asked casually, in a normal voice, in the course of normal activities (not like breaking bad news in a special place, as a big deal) He knows deep down that he is going to die, even if his mind is resisting, so it is a relief when someone broaches the subject, allowing him to let go of pretence, and keeping up an act...
On the first time of asking, he will probably be in denial that he is going to die, so he may not comprehend the question, or ignore it. However, something may start working in his sub-conscious, and the next time that somebody asks it, he may become more responsive. After repeated askings he will engage in meaningful dialogue, asking what do you mean by a natural death?
The desired outcome is that he comes out of denial, and starts planning his own death, starting with where, and with whom? At this stage the carer and family can be brought in. If he wants to die at home, those living with him must accept and support his decision, and work out the details, facilitated by the staff.
I do not agree with para 4.4 on updating, or annual reviews of the decision. I believe that the patient should have the right to annul his decision at any time, (ie to have a normal death) by tearing up the form, but that it should stand unless and until annulled.
3 Living will
a) Do Not Attempt Rescusitation (DNAR) is only one part of Allowing a Natural Death. (AND) Other options which patients should also be given are:
b) Do Not Give Antibiotics (DNGA) for infections because I do not want to prolong my life
c) Do Not Take me to Hospital, (DNTH) because I want to die at home
d) Do Not Ventilate (DNV) because I want to stop breathing naturally
e) Do Not Feed (DNF) because I do not want food
f) Do Not Give Pain Killers (DNGPK) because I want to die consciously.
4 Prominence of form
It is not sufficient to say (4th para of 3.5 in version A, and edited out of version B) The form must be placed in a prominent position in the patients notes. It should at least be on coloured paper, so that it stands out. Consideration should be given to a duplicate being stuck above the bed of a bedridden patient, or on the inside of the front door, so that it cannot be missed by an ambulance team. Ideally the patients wrist should be tagged so it cannot be missed. I cannot see the point of putting a copy on the patients fridge (Kent ambulance service) I have heard of a patient who was so worried about being rescucitated and living for decades afterwards as a vegetable, that they had it tattooed on their chest.
5 Appendix A Allowing a Natural Death (AND) form
The form should be redrafted to include the above extra options, and signed by the patient, ss a living will with witnesses and dated. If the patient cannot sign, the default options are the next of kin, particularly if they have power of attorney, the carer, the GP, the consultant, in that order. The review section should be removed. See my redraft attached.
6 Answers to Caroline Huffs consultation questions.
1 Yes the policy should cover all terminal patients including the frail elderly and children.
2 No, there should be no difference where the patient happens to be.
3 The DNAR decision should not be cancelled on discharge from hospital
4 Unrealistic, but staff should not wait for training before they ask these questions
5 A name tag on the patients wrist with DNAR / AND on it is the best way to alert ambulance crews not to take to hospital and to look for the AND form in the notes.
6 As 5
7 As 5
8 As 5
7 Comments on version B, para 4.2-13
These paragraphs get tangled, tortuous and impractical, to no benefit to anyone. All are superfluous and should be deleted. My suggested redraft of the policy is as follows:
Suggested redraft of document
including Do Not Attempt Rescusitation (DNAR)
This policy applies to terminally ill patients of all ages (referred to hereafter as he or him but intended to apply equally to female patients) Terminally ill means having a mortal condition for which there is no conventional cure.
The purpose of this policy is to give him the choice of the following options:
a) To Allow a Natural Death (AND) or
b) Interventions to Prolong Life (IPL) as the default option..
3 What is a natural death?
A natural death is allowing nature to take its natural course, and let him die without the following interventions to prolong his life:
a) rescusitation if he loses consciousness
b) being put on a ventilator if he stops breathing
c) being fed intravenously if he cannot eat
d) being given antibiotics if he has an infection
e) being taken to hospital, if he wants to die at home
f) being given pain killers if he is in pain
4 Implementation of this policy.
He should be asked the following questions by the staff attending him, in good time, while he is well enough to comprehend it and give a considered reply.
a) do you want a natural death?
b) where do you want to die?
The responsibility for asking these questions is shared equally between all the staff attending him. They should ask them casually, in a normal voice, as a matter of routine.
5 Dealing with denial
The patient will probably be in denial that he is going to die, so he will probably not comprehend the question, and ignore it. However, something may start working in his sub-conscious, and the next time that somebody asks it, he may become more responsive. The questions should continue to be asked by different people until he responds what do you mean by a natural death? Staff can then have a meaningful dialogue with him.
The desired outcome of this questioning is to bring him out of denial so that he can start planning his own death, starting with where? At this stage the carer and family can be brought in. If the patient wants to die at home, those living with him must accept and support his decision, and work out the details, facilitated by the staff.
6 Planning a death at home
The carer will probably have objections why he cant die at home, which should be addressed as follows:
Because I cannot cope with a dead body
Hire an undertaker before he dies, who will take the body away when you phone and ask them.
I cant manage his death
It does not have to be managed. Just wait until he stops breathing.
I cant bear to see his pain
You can phone a doctor anytime who will come and give him an injection, or a syringe driver
There is no equipment at home
We will provide whatever he requires eg commode, wheel chair, padded chair, suction machine for his throat etc
I need some time to myself
We can provide hospice at home, night sitters,
7 Advantages for the carer of him dying at home
TO BE ALLOWED A NATURAL DEATH (AND)
His carer should be told words to the following effect:
If he dies at home you will be in control. Nobody but you can dictate what happens to his body.. If you want to keep it where he died, you can. If you want to say goodbye to him in your way, for as long as you like, you can. Other members of his family and friends can do the same if they wish. This will help all of you to grieve and get over your loss.
However, if he dies in hospital, others will be in control, not you. His body will have to be removed to the mortuary, and there may be restrictions on you seeing it to say goodbye, due to infection control and other regulations.
8 Signing the Allow a Natural Death (AND) form
The form (see appendix A) should be shown to him and his carer. He should be invited to mark the boxes against the interventions which he does not want, and to sign it and date it. If it is witnessed it will have a greater legal status, but not being witnessed does not invalidate it as a statement of his wishes.
All staff should be made aware of his decision to have a natural death by
a) Placing the form in a prominent position in his notes with a coloured tag to flag it
b) A notice posted on his bed or other prominent position worded:
DO NOT ATTEMPT RESCUSITATION (DNAR)
c) A tag should be put on his wrist with AND / DNAR see notes on it APPENDIX A
|ALLOWING A NATURAL DEATH (AND)
Including Do Not Attempt Rescusitation (DNAR)
Record of Decision
Patients first name
Date of Birth
I, the above named patient have decided that I want to be allowed to have a natural death, without prolonging it at an unacceptable quality to me. I do not want the interventions that I have marked in the boxes below to be done to me: I understand that I can change my mind at any time by tearing up this form, after which these interventions may be done to me as considered appropriate by my clinicians.. I agree to wear a tag on my wrist to inform medical staff of this my decision to have a natural death
If I become unconscious, Do Not Attempt Resuscitation (DNAR)
because I want to die naturally in my sleep.
If I have a crisis, Do Not Take me to Hospital (DNTMTH)
because I do not want hospital treatment, and I want to die where I am.
If I stop breathing, Do Not put me on a Ventilator
Because I want to die naturally
If I stop eating, Do Not Feed Me intravenously, (DNFMI) because I do not want to be fed that way
If I get an infection Do Not Give Me Antibiotics (DNGMA) to fight it because I do not want them
If I am in pain Do Not Give Me Painkillers (DNGMP) because I want to die consciously.
Signed by the patient
Date of signing
In the presence of witness 1 signature
Name in capitals
In the presence of witness 2 signature
.Name in capitals
(Please tick the box that applies)
[ ]This decision has not been discussed with my carer
[ ] I have discussed this decision with my carer, who is
Display this form on the inside front cover of the patients medical notes
PLEASE SEND AND/OR FAX TO BE DISCUSSED AND DECIDED
John Kapp email@example.com 01273 417997
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